JP Summers

#1 Best Selling Author / Senior Patient Advocate Community Outreach Manager @GHLForg #migraine #heartdisease #rheumatoidarthritis / Tweets Are My Opinion

[JP Summers @authorjpsummers]

@robertduncanmx besides being AMAZINGLY talented u just made my day w/this selfie of you holding my book THANKS again

[JP Summers @authorjpsummers]

Stroke recovery—but make it fun!

Relearning the basics isn’t easy.

So I turned it into something I enjoy:
✔️ Board games
✔️ Building with @LEGO_Group
✔️ Celebrating small wins

Healing looks different for everyone—and this is mine 💛
#stroke #BrainHealth #occupationaltherapy

[CreakyJoints.org @CreakyJoints]

More than 50 million Americans live with autoimmune disease — and many spend years searching for answers before receiving a diagnosis.

From rheumatoid arthritis and lupus to Sjögren’s disease and ankylosing spondylitis, autoimmune diseases affect nearly every system in the body and often come with invisible symptoms like fatigue, pain, and brain fog.

This month we’re raising awareness for:

• Faster diagnosis
• Better access to care
• More research
• Support for the millions living with autoimmune conditions

Because awareness is only the beginning.

#AutoimmuneAwareness
#ChronicIllness

[Cullinan Therapeutics @CullinanTx]

Join our partners Dr. Ricardo Grieshaber-Bouyer and @GHLForg in the lab at the University of Erlangen for an exclusive look into the promise of T cell engagers, and meet the people driving this research in autoimmune diseases. Learn more: https://t.co/oGPO65Ztok

[CreakyJoints.org @CreakyJoints]

Evenings can be one of the hardest times when you’re living with a chronic illness.

Pain, stiffness, and fatigue often build throughout the day — making it harder to relax, move, or sleep.

Here are practical ways to make your evening routine easier 👇

https://t.co/WcwbH7KrJc

[CreakyJoints.org @CreakyJoints]

Sometimes we’re too afraid to say it out loud. ❤️‍🩹
✅ If I cancel, I’m not being flaky. It’s not personal. It’s my body saying no.
Weekends aren’t always fun—they’re often just recovery.
✅ If you see me resting, I’m not being lazy. I’m managing a lot.
I may look okay and still be struggling.
✅ Making plans takes energy too.
Sometimes even deciding is exhausting.
✅ Some weekends I’m not living—I’m just getting through it.
✅ I still want to be invited, even if I can’t always say yes.
✅A slow, simple hang still counts. I still want to see the people I love.
✅ Please don’t guilt me for canceling—I already feel bad enough.

The kindest thing you can do? Make it easy for me to say yes, and safe for me to say no.

If you know or love someone with a chronic illness, this is what they might not be saying.

#chronicillness

[CreakyJoints.org @CreakyJoints]

Sometimes we’re too afraid to say it out loud. ❤️‍🩹⬇️

Autoimmune disease isn’t just physical.

It can feel like your own body is working against you—
like something inside you is attacking what it’s supposed to protect.

Nearly 80% of those diagnosed are women, often during their most active years—working, caregiving, trying to keep everything moving.

And still…

There’s no single test or quick fix.
Many spend years misdiagnosed, dismissed, or told to “wait and see.”

“You’re fine. Your labs look normal.”
…while you’re still feeling anything but.

Waiting for answers can feel like living in limbo—
hoping for clarity, but learning how to manage symptoms without it.

You can do everything “right”—treatment, rest, food, movement—
and still experience bad flares without warning.

And the hardest part?

It’s not just the symptoms.
It’s explaining yourself. Advocating for yourself.
Hearing “but you don’t look sick” when you’re doing everything just to get through the day.

There are also the questions no one can answer:
Will it progress?
Will I develop another condition?
Will my body respond to treatment?

Living with autoimmune disease means learning how to move through life in a body that doesn’t always cooperate.

This is not your fault.
You didn’t cause this.
And showing up—especially on the hard days—counts more than you think.

If you know or love someone living with this, this is what they might not be saying.

#AutoimmuneDisease #ChronicIllness #InvisibleIllness

[CreakyJoints.org @CreakyJoints]

🚨 Do you live with severe asthma, chronic rhinosinusitis, and nasal polyps (CRSwNP)?

We want to hear what it’s actually like—beyond the surface.

If this is your experience, your voice matters. Sharing your perspective can help improve awareness and support for others navigating these conditions.

No experience needed—just your honest story.

🔗 https://t.co/7uUQ0ZgwSw

[CreakyJoints.org @CreakyJoints]

“But you don’t look sick.”
What you see vs. what you don’t see
⬇️⬇️⬇️

What you see:
✔️ a smile, makeup, cute outfits
✔️ someone showing up for their loved ones
✔️ pushing through at work
✔️ “I’m okay”
What you don’t see:
✖️ the pain they’re constantly managing
✖️ the fatigue that never fully goes away
✖️ inflammation taking over their body
✖️ side effects they didn’t ask for
✖️ the mental exhaustion behind “being strong”
✖️ the fear of being “too much” if they’re honest
✖️ how they can end up bed-bound when they overdo it
Many chronic and autoimmune illnesses are invisible.
That doesn’t make them any less real.
Instead of saying “you don’t look sick,” try:
💬 “How are you really feeling?”
💬 “I’m here if you need anything”
💬 “I believe you”
You don’t need to see it to respect it.

#ChronicIllness #InvisibleIllness

[CreakyJoints.org @CreakyJoints]

🚨 The CDC is in turmoil.

Susan Monarez has been fired after <1 month, sparking resignations and raising concerns about politicization.

@StevenNewmark breaks down what it means for vaccines, emergency preparedness & public trust.

New episode of The Health Advocates:
https://t.co/Z5eOwPEhHS
#TheHealthAdvocates #CDC #PublicHealth

[CreakyJoints.org @CreakyJoints]

Struggling with Arthritis Brain Fog? 12 Tips That Can Help

Brain fog is more than forgetfulness—it can disrupt focus, memory, and energy. These strategies can help you think more clearly and feel more in control.

Read more: https://t.co/aROjfXcoFU
#Arthritis #BrainFog #ChronicIllnessCommunity

[CreakyJoints.org @CreakyJoints]

Morning Routine with Arthritis: 20 hacks that make life easier.
Starting the day with arthritis is hard. Simple hacks—like planning ahead, warming up joints, and pacing yourself—can help mornings feel more manageable. Explore these tips: https://t.co/hwaruAM33o
#Tips #Arthritis #Selfcare

[CreakyJoints.org @CreakyJoints]

Be part of history: Join CreakyJoints for the first-ever Giant Cell Arteritis (GCA) Awareness Day on October 23, 2025.
We’re looking for people in the U.S. living with GCA to share their story on video about what life with GCA is really like. These stories will help raise awareness, educate others, and show the impact of this condition.
✔️ Participants will record a short video (we’ll guide you).
✔️ Your story will help make GCA visible to the world.
✔️ You will be compensated for your time.
If you’re interested in participating, click below to sign up. Together, we can make GCA Awareness Day a powerful moment for education, connection, and change.
Link : https://t.co/wCXwCJeK7B

[CreakyJoints.org @CreakyJoints]

We’re asking our community what living with PsA is really like. Do you have a story to share?  

Take our 15–20 min survey and you may be eligible to enter a raffle to win a $300 e-gift card (5 winners) 
Take the survey here: https://t.co/cfAYj7Ukwd

#PsA #PsoriaticArthritis #PatientVoices #CreakyJoints #AutoimmuneLife

[JP Summers @authorjpsummers]

Playing music out loud from one of my many @Spotify playlists &amp; memes from friends.
#PainAwarenessMonth

[CreakyJoints.org @CreakyJoints]

High-pain days call for creative coping. 💜
From quirky rituals to unexpected hacks, the little things can make a big difference.
What helps you push through? Drop it below ⬇️

#PainAwarenessMonth #ChronicPain #Arthritis #InvisibleIllness #CreakyJoints

[CreakyJoints.org @CreakyJoints]

Explaining your invisible illness shouldn’t feel like an extra job — but for many patients, it’s exhausting. Here’s why validation matters: https://t.co/52zlNdLGyy #ChronicIllnessCommunity

[CreakyJoints.org @CreakyJoints]

📰 The “Make Our Children Healthy Again” plan—what’s really in it?

@StevenNewmark breaks down the leaked draft: awareness campaigns, industry-friendly guidelines, and a revival of old debates on vaccines, fluoride & WiFi.

🎧 Listen: https://t.co/ejVz66BPGy
#TheHealthAdvocates #PublicHealth #PreventiveCare

[CreakyJoints.org @CreakyJoints]

‘It’s just stress.’ ‘You’re fine.’ ‘Nothing’s wrong.’
Sound familiar? Misdiagnosis is one of the biggest challenges people with chronic illness face — and it often delays real treatment and care.
Our community has shared some of the wildest misdiagnoses they’ve ever received, and we know so many of you have been through the same. Have you ever had to push for the right diagnosis — or even a second, third, or fourth opinion?

Drop it below ⬇️ — your story could help someone else keep pushing for answers.

#ChronicIllness #Misdiagnosis #PatientAdvocacy

[CreakyJoints.org @CreakyJoints]

“Trying my hardest not to act how I feel” – every chronic illness warrior

[Wisconsin All Copays Count Coalition @WI4Patients]

Patient access to needed medication is not a partisan issue. Thank you WI Senate Committee on Health for unanimously supporting #ColesAct SB 203. Now the full Senate can make the same powerful statement: unanimously ensure #AllCopaysCount! https://t.co/ZpVxzB0mEp

[JP Summers @authorjpsummers]

I've been acknowledging #PainAwarenessMonth since 2012. That's when I received my 1st chronic diagnosis: #migraine. Then it was #fibromyalgia #rheumatoidarthritis &amp; #heartdisease
I no longer resent it. I coexist to feel some control whenever my body decides to do its own thing.

[CreakyJoints.org @CreakyJoints]

Nearly 1 in 4 U.S. adults live with chronic pain, with arthritis being one of the leading causes. Pain impacts daily life, work, and mental health — yet it remains largely invisible.

This month, we raise awareness, validate stories, and push for better care. Explore resources: https://t.co/lcZLyHY8yq

#PainAwarenessMonth #ChronicPain #Arthritis #InvisibleIllness #CreakyJoints